Saturday, June 27, 2009
Nolan had an EGK, echo, and chest X-ray on Monday first. We then went and met with his opthomologist. His eyes have not improved and so he gave us an rx for drops. We are to put the drops (which are a dilating/blurring drop) in his "better" eye once a day to blur it, which will then force him to use the weaker eye. Optho dr. wants the eye issues to correct before he's 2, so we are to use the drops until Nolan's scheduled head surgery (cranial reconstruction) on Sept. 10. After the surgery we'll meet with optho again to see if the eyes have improved. If they haven't, he wants to schedule surgery to work on Nolan's eye muscles.
Then we met with the cardiologist to review the earlier tests. Nolan has 3 mild to medium heart conditions that are synonymous with his syndrome. #1 Aortic stenosis - which is the narrowing of the top of the aorta. #2 Mitral stenosis - The mitral valve connects the upper and lower chamber of the heart on the left side...it is also narrow. #3 The mitral valve is also leaking. All 3 conditions are mild to medium and we are praying that they stay that way. They want to see him in a year to go through all the tests again to make sure it hasn't worsened. If it has, they surgically correct it. If it hasn't, that's GREAT! Nolan has no restrictions, and we are to carry on, as normal.
Thursday we met with another neurological surgeon in the Chicago area. What a waste of time! She didn't give us an opinion either way and basically told us it was our decision. Ahhhh! I feel as though she looked at Nolan with a syndome diagnosis and basically felt as though there's nothing we can do for him. He's always going to be delayed, so why bother. She didn't say that, but as his mom, I felt that in her attitude.
So, with that, we pray for his sweet little heart and eyes. We contact our surgeon at Riley to just talk with her about our "second opinion." We meet with the plastic surgeon on July 6th and will also have a little more insight once he's seen Nolan.
On a better note, we had a great time with family in Chicago. We got lots of pictures and I will post them soon.
Have I mentioned today how much I love that little boy? :) Well, I'm just smitten!
Sunday, June 21, 2009
Friday, June 19, 2009
Tuesday, June 16, 2009
These 2 little girls were born 8 days apart in December of 2006. Could there be any 2 cuter Christmas babies?
Thanks Brovonts for making the trip. We love you guys!
The first verse and chorus of Jesus Paid it All goes like this,
I hear my Savior say
Thy strength in deed is small
child of weakness watch and pray
Find in me Thine all in all
Jesus Paid it all
All to him I owe
Sin had left a crimson stain
He washed it white as snow
As was recommended to me, I've been studying Romans 8 the last few days. Verses 31 & 32 say, "If God is for us, who can be against us? He who did not spare his own Son, but gave him up for us all --how will he not also, along with him, graciously give us all things." Jesus paid it all, as the song says, and God didn't spare his own son...but, rather graciously gave him up. What does that mean? It's taken new meaning for me these last few weeks. While yes, it means for those who accept him as Lord and live for him will spend eternity with him, but it also means that the sacrifice was enough for all our sins. It's easy, I think, to be in a trial and feel that maybe you're being punished, as if the trial is punishment for sin. But, if that were so, then what does that say about what Christ did? Maybe that his death on the cross wasn't enough? I don't believe that. Jesus paid it all, remember. His sacrifice was enough for all things. God is for us.
On a funny note, Aubrey returned from VBS last night around 8:30pm. I said, "How was it? Did you have fun?" She said in a very monotone voice, "Yes...it was...but...it really wore me out." Thank you VBS! :)
Thursday, June 11, 2009
Ok, there, I said it, it's out, breathe...
I won't lie, we cried for darn near 3 straight days. Why us? Why Nolan? Why our baby? Those odds, 1 in 20,000...and it's us? Is this really happening? I think we both woke Monday with a little more perspective, and here is how we are going to approach this situation. Really, nothing has changed. He's our baby and we love him...a deep, crazy, abundant love. He's a joy to have around. We, even though circumstances are a little different, will still do exactly what we have done with raising the girls, and that's to always do what's best for each of them. Will Nolan's life be hard? Probably. Will he always be delayed? Probably. Do we love him any less? NO WAY! I can't sit here and honestly tell you that I am ok with all this quite yet. That I don't ache when I think about it. That there isn't still fear, grief, and sadness. Even, that I can see the Lord in all this...because I would be lying if I said I did. However, I can say that I know in my head that He's in control. That He made Nolan perfect in His eyes, and that He's given him to us for a reason. I don't know what that reason is, and maybe I'll never know. I believe what the Bible says, and I believe in the promises the Lord gives. I believe He loves our family. It's hard to really, truly feel that right now, but I know it. I would imagine that as time moves on, I will be able to feel it as well.
We've spoken with the dev. ped. this week. We said, "Ok, we've cried, we're ready to get a game plan, and move on." Life doesn't stop, you deal and you move on. So, with that, he's booking other specialists for us to see and we're setting up the appropriate therapies Nolan will need. And like that, we move on. We treat Nolan that same as the other 2, and we expect him to do all the same things, just maybe not in our time. He's our baby...nothing has changed.
In Matthew 8 Jesus and his disciples are out on a boat and a great storm comes, but Jesus sleeps. They come to him and beg for him to save them. Jesus says, "You have little faith, why are you so afraid." Jesus immediately calmed the storm. Jesus was able to sleep on the boat because he had no fear, knowing He was in control. He wanted the disciples to have faith in Him...perhaps, testing their faith? Please know that I don't think for a moment that Jesus is sleeping right now when it comes to our situation because He's abandoned us. But, rather, maybe he's sleeping and at peace because He's in control, and He wants us to have faith in Him, like He wanted from the disciples. For the last year, I've prayed, "Jesus, heal our baby! " In essence, like the disciples, "save us!" Clearly, that wasn't His plan. I need to sit back, have faith in my Creator, and wait. Jesus is calmly sleeping, I want to also.
We feel the prayers of all of you who are praying...please continue. We are ok, really, we're ok. We're going to choose to embrace this trail as the Lord would have us, because it honestly is a choice. We can either wallow and be miserable, or we can embrace this (the good days and the bad days), and we enjoy our life with these precious babies.
A sweet, dear friend told me when I shared our story with her, "God's will will never take you where His grace and mercy are not." And with that, I'll end.
Monday, June 1, 2009
So, without further delay, I want to share a few things happening in the Paschal house, not related to Nolan:)
#1 We've planted a garden this year (tomatoes, cucumbers, lettuce, peppers, strawberries, watermelon, cantaloupe and wild flowers)! How excited am I? Very! My sweet sweet hubby spent countless hours digging gravel out of the spot that we tilled for our garden. Our house was a rental for 20 years before we bought it and there have been several things we've noticed about the house that have caused us to scratch our heads. One of those being that the spot we tilled up for our garden was full of gravel. ??? After the gravel removal, Brandon mixed the soil with some compost and viola...
Papaw Dave and Nolan
Pool time! I couldn't resist and shot with my little muffin:)
Is he handsome, or what?
If this next one doesn't make you smile, I don't know what will.